Neutropenia

We recently learned Glenny is neutropenic. Which is basically that his body isn't making an important white blood cell called a neutrophil. This is dangerous because it is responsible for fighting infection. We have been trying to figure out what could be causing it and the doctors do not know for sure. They suspect it is benign childhood neutropenia, but it could be something else. They would like to do an invasive procedure and more testing. For now we have to go in and have his blood tested weekly to monitor it.

Each time baby Glenny has a fever, we have to go to the hospital and have them do tests and give him a powerful round of antibiotics. Glen has done so well despite how hard it's been. The hardest thing was when he had to stay at the hospital for a few days. I felt so bad for him as he is at a curious age where he wants to move around and explore everything.

At one point he had ripped the IV out of his arm in the middle of the night and there was blood everywhere... Watching them pin him down, poke him, and try to look unsuccessfully for a vein over and again was also hard.

No matter the child, I am sure this would be difficult for any mother, but Glen is an ANGEL baby. I'm really not sure there ever was a sweeter baby born on the face of the planet. He is by far my most snuggly baby, and he loves everyone he meets. One time he leaned in to a perfect stranger just to give them a hug and have him snuggle him. His sweetness only makes watching him suffer all the more painful...

SO, this week our assignment was to write a song with these chords:

B Major, G flat, A flat minor, B Major, E Major, G flat

All of those chords are bar chords except for the E Major. I'm still working on switching between bar chords and trying to press down hard enough to get it to sound clear.

I had my teacher send me a recording of it so I could complete the assignment! It is amazing though, I can see how each week my fingers get stronger and sometimes I surprise myself when I hear myself play an a shape bar chord clearly on the first try. It doesn't usually happen, but when it does, it's definitely awesome and makes me feel super hopeful!

I was excited to work on my song and originally made a different song about how the season is changing and football/cheerleading is ending and how I loved my four children. But then when we had to go to the hospital this past week and also after learning about how Glenny might have to have a bone marrow test done, I really had a hard time thinking about anything except for what was happening with him.

I decided to redo my song with a new melody and lyrics. It felt therapeutic to write about and even to sing about it. I sometimes sing the line, "you're such a real live dollie" to baby Glenny now.

He truly is a little doll and I love him so much. I am thankful for all of the support and prayers we have had while we've been going through this. The people up here in New York and in our church have been so wonderful to us.

Here are the lyrics and the song:

Neutropenia

Here we go again

On and on and on

Back and forth we go

To and fro

Tossed around the hospital

Waiting for the answers, no answer...

Neutropenia go away

You’re not invited to stay

Why’s it gotta be this way?

He can’t deserve this

My sweet little boy

With everything he gives                                                                                                                                                                                                                                                                                                                              

Love for everyone, hugs for all

A real life dollie

Neutropenia go away

You’re not invited to stay